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undiagnosed pain condition
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undiagnosed pain condition

I have been struggling with a chronic pain condition for almost 2 yrs. My most persistent symptoms are pain(aches, cramps, tightening & sharp pains) in chest , breast, arm, tongue & jaw area. My newest symptom is a definate spasm in the middle left chest area. I don't feel physically capable of doing alot anymore. I don't have tender or trigger points.My right nipple seems sore & may trigger pain,but thats it. I take ativan, protonix, vitamin e, b12, folic acid, multi vitamin, occasionally tamazapan and I have darvocet n100, but the one time I took it i think it made my blood pressure go up. Tests: 2 yrs ago I had an upper GI & ultrasound of abdomen. Showed a scared kidney. Blood work showed vitamin b12 low normal. 1 1/2 yrs ago I had a stress test with scans and was told it was fine. Last june I had an ultrasound of my heart and wore a 24 hour holter monitor. Was told I had benign pvc's & pacs.  In december I had a cat scan of chest repeated ofter taking prednisone because it showed swollen lymph nodes(they're considering sarcoidosis, but after prednisone didn't affect lymph nodes or decrease pain its kind of been dropped) I took prednisone for 1 month and had a bad all over burning spell where my blood pressure was up that was blamed on the prednisone. Last spring I also has a lymph node under my ear removed because it wouldn't go away and it turned ou to be a granuloma. February 18th I had a left heart cath done and was told my heart was clean.  I am a 37 year old female with a family history of heart disease in fairly young members (father passed away at 54) and Lupus which my blood checked negative for. Although its been 2 yrs my doctor doesn't see any need to re do blood work. I apologize for the length of this and greatly appreciate your service. I wanted to ask if in general I have had enough testing to rule out my heart especially with the spasm I've recently had on left middle chest? If not what conditions could be possible and are they serious? Its been a long road and you begin to doubt yourself, but the pain is real!!Do you have any suggestions on possible causes or treatments to alleviate some of this? Do you know of another avenue I might take to get a diagnosis or should I just try to accept and live like this?  Any suggestions will be greatly appreciated.  Oh yeah, cat scan also showed scattered calcifications in spleen etc. and I had an MRI of neck that showed some minor arthritic changes(bone spurs) which they didn't seem to think would cause all my symptoms.  Thank you, briane.
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Thank you for visiting the Family Practice Forum.
My goodness, you certainly appear to have had a very extensive workup. Despite this you seem to have had very little success in the diagnosis and treatment for what ails you.

You describe many symtpoms:

1. Chronic pain
2. muscle spasm
3. Swollen lymph nodes
4. History of a "granulomatous" lymph node.
5. Normal Stress test and Holter Monitor
6. Sore nipple

You mention the presence of this granuloma. I have two thoughts. Firstly, chronic granulomatous disease.

The human immune system, which protects us from disease, is made up of a complex network of highly specialized cells and organs. When any part of this network is faulty, it interrupts the smooth functioning of the immune response and can result in an immulogic disorder. Chronic granulomatous disease (CGD) is actually a group of rare, inherited disorders of the immune system that are caused by defects in the immune system cells called phagocytes. These defects leave patients vulnerable to  chronic inflammatory conditions such as gingivitis (swollen inflamed gums), enlarged lymph glands, or tumor-like masses called granulomas. While not malignant, granulomas can cause serious problems by obstructing passage of food through the esophagus, stomach, and intestines as well as blocking urine flow from the kidneys and bladder.

Although I realize you mentioned that you do not have "trigger points", the second thing that really comes to mind is Fibromyalgia.

Fibromyalgia is a rheumatic disease present in approximately 1 in 100 people. It is more commonly present in women ages 20-50 and is characterized by widespread pain in muscles, tendons or other fibrous or connective tissues resulting in pain without weakness.

Diagnosis
It is important to note that there is no specific blood test that will diagnose this disease. Blood tests for blood counts, arthritis, thyroid function and electrolytes will be normal as will any Xrays. Diagnosis is based on the presence of 11 (or more) of 18 tender points in the fibrous tissue of the muscles of the:

2 Comments
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Avatar_n_tn
Thank you for your quik response it is greatly appreciated.

Although I do seem to have fybromyalgia symptoms I was told by a reumatologist that I could not be diagnosed with it because I don't have the tender points and never have had.

I know people with fybromyalgia and they all have the tender points.  None of them have so much pain in the chest like me though.

I have had extensive testing and in away it is embarrassing in another way it is completely frustrating because this is effecting my quality of life.

1. Could the possible sarcoidosis I mentioned or granulomas disease cause the pain?  How would you treat that?

2.  Can you have fybromyalgia without having the tender points?

3.  since I have so much pain in my chest it has always scared me of heart disease.  I'm trying to deal with this.  Generally speaking is the testing mentioned above enough to rule out the pains being my heart?

Within the last 2 years I've had A stress test with scans, holter monitor and ultra sound of heart and a left heart cath. That extensive I know.  All I was ever told is that I have benign pvc's and pac's.  I do occassionally have days where I feel my heart flutter for 2 or 3 days at a time.

My pain is severe at times and at times it isn't.

Anti inflamatories never did anything for me.  I've taken several.  It does help some if I get a good night sleep.  Anti depressants although they calmed me down never stopped the pain.  I never took them for that long though.

I've gained 30 pounds since this started because I'm not as active as I used to be because of this condition.  Its changed my life.

4. Do I have any other options?

Thank you so much for your time.  Briane
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Avatar_n_tn
I know that I am not crazt and that something is going on with me. I do not like going to the doctors office and only go when really needed. I have been seeing a orthopedic who requested my medical records, talked to my pcp and they felt as if I might have MS. I denined most of the symptoms at first but the more I have read, I seem to have all but two of thw symptoms. They sent me to a nuro, who acted as if it were no big deal. I'm guessing only because he deals with this daily. I do not feel well and I am very frustrated. I do not even know how to find another doctor to help. something has to help, I'm new to the internet and not very well using searches. Are ther any suggestions?
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